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Linnea Winters’ Patient Story

Linnea Winters is a very bright, outgoing third grader, with interests that might seem pretty typical for an average 9-year-old. She loves to read books, enjoys riding her bike and scooter, and playing basketball, and has recently started violin lessons. An annual highlight for Linnea is the Father/Daughter Ball, which Linnea has attended for the last five years, dancing the night away with her dad, Phil. Linnea has a lot of fun, despite the fact that she is living with a physical condition that challenges her every day. It is because of her good nature, tenacity and the support of her family and neurosurgeon, Monica Wehby, MD, that she has been able to live as normal a life as possible.

Linnea was born on June 9, 1997, with spina bifida, hydrocephalus and club feet. Brenda and her husband, Phil, went for genetic counseling prior to her first pregnancy because Brenda had a brother who died from a neural tube defect just shortly after his birth. They were told that there was just a 1 to 2 percent risk of having a baby with this birth defect. Their firstborn child, Ethan, was fine. Brenda took folic acid for three months prior to and throughout her pregnancy, a preventative measure that is recommended for women of childbearing age. The second time around, 18.5 weeks into her pregnancy, Brenda and Phil were told shattering news about their unborn baby’s condition, which was detected by ultrasound.

Spina bifida occurs during the third and fourth weeks of pregnancy when a portion of the fetal spinal cord fails to properly close. As a result, the child is born with a part of the spinal cord exposed on the back. Although scientists believe that genetic and environmental factors may act together to cause spina bifida, 95 percent of babies with spina bifida are born to parents with no family history.

Linnea underwent her first surgery as a newborn at Emanuel Children’s Hospital in Portland, Ore. Dr. Wehby closed up Linnea’s back when she was three hours old, followed by a shunt when she was 2-days-old, to treat her hydrocephalus. About 80 to 90 percent of children with spina bifida are born with or develop hydrocephalus. Hydrocephalus is a condition in which excess cerebrospinal fluid builds up within the ventricles (fluid-containing cavities) of the brain and may increase pressure within the head. "Most of these children require a ventricular shunt to control the build-up of spinal fluid. The shunt will remain in place throughout the individual’s life, but usually needs to be replaced several times. Linnea has had two shunt revisions, at age 7 months and age 4," said Dr. Wehby.

At age 5, Linnea underwent surgery for tethered spinal cord. At birth, the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In a baby with spina bifida, the spinal cord is still attached to the surrounding skin, preventing it from ascending normally, so the spinal cord is low-lying or tethered. Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord, which can lead to a variety of physical problems.

Things are not always easy for Linnea, her parents or her older brother, Ethan, who is 13. "When she first realized that she was different, which was about age 4 or 5, she cried often because she was sad that she was born with a hole in her back. I told her that I was sad too, but that I loved her and was glad that she was my daughter. I told her that being sad did not change anything; she still had to take her medicine or have surgery because life goes on," recalled Brenda.

"I will never forget what the physical therapist told us when Linnea was 6-weeks-old" that she would never sit-up, roll-over, crawl or walk, let alone run. Linnea wears ankle-foot orthotics, as do many children with spina bifida, but she is remarkably coordinated. When Linnea expresses disappointment about not being as fast as the other kids in gym class or on the playground, I tell her that I am glad that she does these things anyway, and that this is a miracle that we should be thankful for," said Brenda.

Linnea has faced her fears and shared details about her condition with her class. "There are more people at my school finding out that I have spina bifida. They are coming up to me once they find out who I am and telling me that they know and don’t really care if I have spina bifida. They say they accept me for who I am and think I am just the same as they are," said Linnea. Fortunately, with proper medical care, many children with spina bifida can lead active and productive lives. With recent advancements in medical care for these children, the outlook continues to improve.

Women of childbearing age can reduce their risk of having a child with spina bifida by taking 400 micrograms (mcg) of folic acid every day, whether they are planning a pregnancy or not. Research has shown that if all women of childbearing age took a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70 percent.